Anyone use zonisamide?

[KarenB]

I guess they do things differently in UK - usually GP's don't get involved much in seizure meds and such.

Best wishes on your wedding!!

 

[Azusa]

At 50 and no really change......

 

[KarenB]

50 was Jon's starting dose -- but he was just a small child of about 44 pounds at that time, so he probably had more side effects than an adult on that amount would experience.

He's now up to 250. If he continues seizure free for several more months, I think I'm going to discuss with our neurologist bringing him back down to 200 -- I have been noticing recently some cognitive dulling that I hadn't noticed before, plus it's a constant battle with the acidosis.

But...it DOES work for us, so we'll probably stay on it long term.

 

[Azusa]

I'm waiting/wanting the apatite side effect to come but I guess I'll have to wait till I get to 100 or whatever she gives me

 

[MaeDae]

It's been a little over a week since switching to zonisamide, I did it with out stepping down from depakote as well. dr never returned my call, I took it as there was no concern to go from one to the other and it didnt matter cause Im tired as hell too. So, any hoot. I have lost 8lbs so far. my appetite is a little less, but the most important thing is that Im not on the emotional rollercoaster. Im not up at 1am eating and crying, laughing, eating and then crying. I had a few stomach aches, but when I drank a few glasses of water I felt better. I missed a dose by accident (fell asleep) and I could definately feel the difference. I was very, very dizzy and wierded out, it felt like the bottom was falling out. I still have focus issues, I guess thats permanent. I dont think any med will make that go away. So far I consider the med a success. The side affects for me? only one so far, and thats dizzyness with a missed dose or if I wait to long to take 1st or 2nd dose. I need to work on the best time to take this med in the morning and in the evening. Im active until about 11pm - 12am and don't want to crash/bottom out before then,especially since Im usually not home and am usually by myself. This may be the winner!!! When I think about it, I have not had one melt down (emotional breakdown) all week. Cognitive? I noticed some small issues but nothing that would make me stop taking it... I'm a born idiot and so far this med doesn't amplify it.

My dr started me at 100mg 2x's a day. He didn't say when to take it, he didn't say whether or not to stop taking the depakote. Just like I found this site.... I had to pretty much figure it out for myself.

Good luck to you!

 

[Nakamova]

I'm waiting/wanting the apatite side effect to come but I guess I'll have to wait till I get to 100 or whatever she gives me.

I'm not sure you should be focused on that side effect -- the #1 goal is seizure control, right? There are other ways to work on losing weight that don't involve taking powerful brain meds. You might be interested in this article that discusses the use of Zonisamide for weight loss: http://articles.chicagotribune.com/...1017_1_epilepsy-drug-side-effects-weight-loss

 

[Azusa]

I'm not sure you should be focused on that side effect -- the #1 goal is seizure control, right? There are other ways to work on losing weight that don't involve taking powerful brain meds. You might be interested in this article that discusses the use of Zonisamide for weight loss: http://articles.chicagotribune.com/...1017_1_epilepsy-drug-side-effects-weight-loss

I know that and I take it for seizures but I consider it a added...... Bonus, don't get me wrong I'm not overweight but I wish to be a bit thinner

 

[KarenB]

Hi MaeDae --

We started out with giving Jon his Zonegran twice a day, but he now gets all 250 mg after supper. His neurologist said you can do that with Zonegran -- take the entire dose at one time, because it has a long half life. However, if you tend to fall asleep and miss a dose on occasion, it might be better to continue with two doses.

Jon starts getting really sleepy about 1 hour after taking his Zonegran.

Delighted to hear it's been helping with mood swings!

 

[MaeDae]

I still have a very good appetite on zonisamide, it has not affected my normal daytime appetite other than feeling full after eating. where as before, I was constantly hungry no matter what or how much I ate when taking depakote. My stomach actually growls when Im hungry. I have added more vegatibles and water. I really like the way I feel also. Im not exhausted, my energy level is higher, Im not depressed by the smallest things, and the simple partial seizures seem to be controlled. I see my dr in 3 weeks and i am excited. The Depakote worked in regards to the seizure activity but, I gained weight and I was very, I mean very emotional and unstable. I also slept real hard. I have been sleeping 7 to 8 hours and not 12 to 18 (especially on the weekends) I would sleep most of the weekend away in the past.
I don't know if this mean I in fact am suffering from seizures or just crazy. I just know I haven't felt this good in about 2 years. I have missed me so much. When I look in the mirror... I can't believe it. I don't know how long this is going to last, but I pray dear God, let this be it. Let this be the end of the crazy things I've been going through, let this be the end of the pain, the tears, the fear of not knowing, when? where? how? To get just a small piece of my life back is all I wanted. Some since of normalcy? I was just about to look for another neuiro dr, but as fate would have it.... thus far.... its working in my favor. I wish everyone this feeling of wellness.

 

[Azusa]

I still have a very good appetite on zonisamide, it has not affected my normal daytime appetite other than feeling full after eating. where as before, I was constantly hungry no matter what or how much I ate when taking depakote. My stomach actually growls when Im hungry. I have added more vegatibles and water. I really like the way I feel also. Im not exhausted, my energy level is higher, Im not depressed by the smallest things, and the simple partial seizures seem to be controlled. I see my dr in 3 weeks and i am excited. The Depakote worked in regards to the seizure activity but, I gained weight and I was very, I mean very emotional and unstable. I also slept real hard. I have been sleeping 7 to 8 hours and not 12 to 18 (especially on the weekends) I would sleep most of the weekend away in the past.
I don't know if this mean I in fact am suffering from seizures or just crazy. I just know I haven't felt this good in about 2 years. I have missed me so much. When I look in the mirror... I can't believe it. I don't know how long this is going to last, but I pray dear God, let this be it. Let this be the end of the crazy things I've been going through, let this be the end of the pain, the tears, the fear of not knowing, when? where? how? To get just a small piece of my life back is all I wanted. Some since of normalcy? I was just about to look for another neuiro dr, but as fate would have it.... thus far.... its working in my favor. I wish everyone this feeling of wellness.

Damn your lucky, wish that medication would do the same

 

[MaeDae]

Hi MaeDae --

We started out with giving Jon his Zonegran twice a day, but he now gets all 250 mg after supper. His neurologist said you can do that with Zonegran -- take the entire dose at one time, because it has a long half life. However, if you tend to fall asleep and miss a dose on occasion, it might be better to continue with two doses.

Jon starts getting really sleepy about 1 hour after taking his Zonegran.

Delighted to hear it's been helping with mood swings!

Hi Karen,
I was such a basket case while taking Depakote, I finally broke down and told my neuro dr about my emotional roller coaster ride. I told him how one minute I was fine and the next I would be weeping uncontrollably and how I was constantly depressed, my lows out weighed my highs. So, not sure if the zonisamide is controlling mood swings or not taking the Depakote had rid me of them? but just the same thank you, Im glad to be rid of them as well... I still get a little blue, but not at the drop of a feather or snap of a finger. Does this med cause depression too? I have to go back and look it up again.

 

[KarenB]

Hi MaeDae,
Our son was on Depakote for about the whole year of 2010. It did seem to affect his awareness of what was going on around him -- he seemed to retreat into himself. Later, when his doc increased his dose of Depakote (I think it was at 1200) -- that's when we saw dramatic and awful emotional reactions. In fact, his school called to say he had just sort of "shut down." He was crying all the time.

So...then we began to wean off of Depakote. Each time we reduced the dose, his teachers and therapists said it was like "turning on a light bulb." He was much more aware of the world around him, and began to make a lot of progress cognitively.

Jon also gained weight on Depakote -- not on the lower dose, but when the dose was increased. Oddly enough, he gained weight, even when his calorie intake did not increase (he was on the Ketogenic diet, so we weigh out and calculate calories/fat/protein/carbs for every bite that goes into his mouth). It seemed like it changed his metabolism. As he was weaned off, he began to lose weight, even with no changes in calories. In fact, we increased his calories, and with the increased calories he just maintained his weight.

Jon initially lost weight on Zonegran, but now he has his appetite back, and is actually gaining about 1 pound a month -- which of course is normal for a growing 9 year old. If he starts to act a little tired or loses his appetite, that's a signal to me that he's probably going into a bit of acidosis, so we'll increase his fluid intake a bit.

 

[MaeDae]

Being that yesterday was mother's day, I ate a little more than normal. I actually forced myself to eat more because my mom had cooked such a wonderful 20 course meal...yummy. Well, about 2 hours later, I had the worse case of loose stool in my life. my stomach and I battled for about an hour and a half. lesson learned.... don't over eat... don't eat too much rich fatty foods.... and only one piece of lemon cake and not 2 : (. Was this because of the zonisamide? Im sure it was. Like I said earlier, I would eat when I was hungry, but I wasn't eating elephant size portions. I didn't eat elephant size portions, but I had to sample just about everything my mom cooked yesterday, which was a lot. As for the cake, all though I had 2 slices, they were very small.... still one slice too many!
Again, did the zonisamide cause the loose stool? It's the first episode I have had since I started taking it about 2 weeks (this wednesday) now. Nevertheless, lesson learned.!

 

[MaeDae]

Damn your lucky, wish that medication would do the same

How long have you been taking it? Are you taking it for seizure control as well? Are taking another AED with this med as well?

Hang in there, it will get better.
Wishing you nothing but the best!!!

 

[KarenB]

Jonathan has quite a bit of loose stool when he started taking Zonegran -- especially when he got up to 200 day. In the month of November, he had diarrhea every day but two. I kept thinking it was the Zonegran, and his doc was insisting it wasn't.

I did find this article that indicated that 5% of people on Zonegran experience diarrhea:
http://www.drugs.com/sfx/zonegran-side-effects.html

At any rate, we ended up having to work with the GI doc and Nutritionist to get it cleared up (zinc, probiotics and pancreatic enzymes, plus cutting out a lot of certain foods for awhile).

Now...he's pretty much back to normal in the gut department -- although still on 250 mg of Zonegran. I wonder if acidosis has anything to do with the diarrhea? (the reverse can certainly be true)

 

[MaeDae]

Sunday was the only day for the loose stool, glad thats over with, but, I felt funky for the last two days. Kind of jerky all over. Mentally I feel good, physically I feel spastic/elastic, like im about to stretch out like a rubberband. It only seems to happen in the mid afternoon and late evening, I think they are seizures/aura's or whatever? Why? because they don't last long, and Im extremely sleepy/tired afterwards? had sensation of skin crawling also. I actually looked down at arm and hand to see if it was...nope it wasn't, but it freaked me out! Hmmm, wonder whats going on? Perhaps med needs to be upped or lowered? still have 3 weeks to see neuro dr. Maybe because of the loose stool the other day, maybe it messed with the levels of zonisamide in my body?

 

[KarenB]

You're absolutely right that your diarrhea could have messed with your med levels. That seemed to be one of the issues we were dealing with. I'm not sure if the Zonegran was causing the diarrhea, or if it were some sort of virus that led to a chronic inflamed bowel, but once we got the GI issues under hand, that's when we saw seizure relief.

Most of your symptoms sound like simple partial, except the skin crawling thing. I remember reading somewhere that some meds can cause that effect (but it might also be a seizure thing).

 

[MaeDae]

day three, still feel funky : (. I know its simple partials, I think dose needs to be raised or need something else to aid in releiving symptoms. my stomach doesnt hurt but its in knots, my head is rushing, arm on left side gets rigid, head wants to turn to right and seeing color shapes, even smelled amonia this morning (that scared me). Last night, started laughing after tossing socks into dirty hamper, it was like my arm was a slingshot and it felt like I hit my funnybone which radiated up my rightside, tickeled but scared me, so I laughed for a minuted or two and then, barried my face in my pillow and cried... what the *&(# was this all about!
I have noticed that each time I have a break between partial seizures (a week or two) and then have one, they are always supper worse that what I remember. Guess the zonisamide aint workin...huh? Oh chit chat : (. I was thinking of upping my dose myself, but I will wait to talk to neuro dr. on the 4th of june. If I don't feel any better by Friday, I will call his office on Monday.

Karen,
Thank you so much. You have been so helpful to me with this med. I have learned a lot and still have a lot to learn. I eat more vegetables and drink more water because of what you posted earlier in this thread, I think that has helped me tremendously, especially with gastric issues. I already dont have a gallbladder, I dont need any added issues with digestion and I wanted this to be the last med that I tried (sick of trying em out). So thanks again. I am very appreciative. I hope your son continues to improve. "God Bless"

Azusa, is the zonisamide working for your seizures hun?

 

[MaeDae]

I had a thought, it could be the levels of depakote are way down? I have not taken depakote since I started this med. Maybe that's why Im having simple partials again? I started taking this on the 1st of May, I stopped taking the depakote on the 1st or 2nd of May. That's almost 2 weeks. That makes sense doesnt it?

 

[Nakamova]

Usually docs make sure there's more of an overlap between meds, so that the patient can be still tapering off one while ramping up on the other. So yes, the Depakote withdrawal might be contributing to your symptoms. Will you be increasing the Zonisamide dose, or are you at the target dose already?